MEadvocacy

MEadvocacy is a project of May12.org, a 501(c)(3) not-for-profit corporation whose mission is to raise global awareness and education for complex immunological and neurological diseases, including Myalgic Encephalomyelitis (ME). Mary Ann Kindel and Joni Comstock, both American patient advocates, launched the project in 2014.

Their mission as an all volunteer organization is to advocate for Recognition, Definition and Research for Myalgic Encephalomyelitis.

MEadvocacy's current goals are to promote and support activities such as:

• Getting Myalgic Encephalomyelitis officially recognized as its own distinct disease in the US. ME has a 60 year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969.

• Getting a single clear ME expert definition for diagnosis and research, adopted as the official definition for ME. Examples are the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC) or an even better definition with the CCC and/or ICC as starting points. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease.

• Getting government funding to study this devastating disease, in the amount of $250 million annually – an amount on par with similar diseases such as Multiple Sclerosis.

Online presence

• MEadvocacy Blog
• MEadvocacy Facebook
• MEadvocacy Twitter

See also

• Mary Ann Kindel

Learn more

• MEadvocacy.org

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.